Over 1.2 million people in England have a learning disability and face significant health inequalities compared with the rest of the population.
People with a learning disability, autism or both often experience poorer access to healthcare.
About 20% to 30% of people with a learning disability also have autism.
The term learning disability and intellectual disability are used by different people and organisations to describe the same condition. Learning disability is the official term used by NHS England and is used for a child or adult with a reduced intellectual ability and difficulty with everyday activities (Valuing People 2001 NHS England). The term intellectual disability is used by the World Health Organisation and some countries.
Children, young people and adults with a learning disability, autism or both have the right to the same opportunities as anyone else to live satisfying and valued lives, and to be treated with dignity and respect.
People with a learning disability should have a home of their own within their community, be able to develop and maintain relationships, and have the support needed to live healthy, safe and rewarding lives.
HEE has been working in partnership with other organisations to create the All-England Plan for Learning Disability Nurses. This is an easy-read version. The plan outlines our commitment to making sure we have enough learning disability nurses in the future and details how the NHS plans to improve the quality of care for people with learning disabilities or autism.
Mandatory training for all health and social care staff who support patients with learning disabilities and autism has moved a step closer with the announcement of the partners who will design, develop trial and evaluate the training. The training is named after Oliver McGowan whose sad death shone a light on the need for health and social care staff to have better access to training that offers a greater understanding of the conditions and will help improve their skills and confidence when delivering care. Read this item in full.
We used procurement processes that included the direct involvement of people with lived and professional expertise and ensured they were active in every stage. We made it clear that autistic people, people with a learning disability and family carers must be involved in every stage of the trials and must be appropriately remunerated for their work. There was an assessment panel for the trials and a separate panel for the evaluation contract. Each panel included representatives from Health Education England, Skills For Care, the Department of Health and Social Care and NHS England and NHS Improvement, as well as representatives from the ‘workforce autism group for England’ and the workforce expert by experience panel. On each panel there was at least one autistic person, one person with a learning disability and one family carer who each represented a network of other people with that lived experience. The panels reviewed all the bids and shortlisted those which met the quality criteria to give a short presentation and answer some further clarification questions. After the panels had assured themselves of the quality of the bids, an exercise was done to assess the costs and benefits of all the proposals that met the quality required. New trial and evaluations partners are each leading a consortia of diverse organisations and networks involving 56 organisations.
Some families and carers looking after those with learning disabilities or autism, may need extra support at this time. We are promoting awareness of two resources on Positive Behaviour Support (PBS). PBS is a person-centred approach to bring long-term support to people with a learning disability, autistic people or those who have both, who have or may be at risk of developing, behaviours that challenge - this includes children, young people and adults.
This video aims to give healthcare staff an awareness of what can cause challenging behaviour and what can be done to support people and families before medication or admission become options. This resource on the HEE Star also has information about PBS. Please share these with families and carers of people with learning disabilities and autistic people, learning disability employers and voluntary sector organisations working in this field.
Education and skills development are about all the ways healthcare staff can learn to do their roles to support people with a learning disability, autism or both. It includes how healthcare staff become trained, qualified and stay up-to-date.
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Leadership is about making sure that teams and services are well-led and well-supported, and that they are always working together to improve the quality of care.
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